Not everyone with lupus goes through "tragic stuff", as you put it. I was diagnosed about 9 years ago after many years of believing that I had lupus. I can't say that these have been the most fun years of my life, but with the help of some fine doctors, the right meds, plenty of self care, and a good support system, I feel better today than I have in years. I also have developed a new appreciation for things that I'd always taken for granted.
I'm sorry you feel so lousy and so scared, but hopefully you have found a good rheumatologist who will walk you through this, and do take advantage of this forum. Support and understanding are critical when you have a chronic medical condition, and you'll find both here. Hang in there!
SLE, fibro, renauds, restless leg?